Leading the Blind

On February 18th, 2011, our lives were changed forever when our son Christian Taylor Buchanan entered the world. He was born with a bilateral cleft palate and lip and almost completely blind. This blog is the story of his life, the joys we share, the challenges we encounter, and the amazing and trying journey ahead of our family!

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Christian Taylor Buchanan

Wednesday, August 16, 2017

I'm sure many of you have already seen some social media posts about it, but I wanted to take some time to really dive in and address Christian's upcoming school year and what it's looking like so that you guys would all know what's going on. For all of our friends who keep up with Christian and his progress, I figured you would be interested and concerned to know, and I am happy to share. :) I also wanted to answer some questions about it that I thought you guys might have, because it is something new to us and foreign to most people. The majority of folks do public school, so this isn't the traditional route.

Sooo....

YES! We are homeschooling!

So, the obvious first question is "Why?"

Well, there are a couple of reasons that I chose to homeschool Christian this year. Probably the most compelling reason was how bad Christian's last school year ended up being. We were driving 2 hours each way to get him to school, leaving home at 6am. That itself was exhausting, but we were hopeful that it would be worth the sacrifice.

1st day of school!

Nursing was completely unstable during this time as well. We started having issues where we didn't have nurses some days so Christian couldn't go to school when he was supposed to. He has to have someone who is able to feed him and use his gtube at school or he just can't go. He has to eat. So because he was dependent on someone else to be able to attend with him, there were times when he just couldn't go. Some days I had to choose between sending Christian to school alone with a nurse I was uncomfortable sending him alone with, or someone who was brand new and didn't know how to care for him yet, or just not having him go to school at all. His school was not always thrilled that I chose not to send him when I wasn't comfortable with who he'd be with, and understandably so, because he was missing instruction time; but I simply couldn't send him if I wasn't confident he as safe and would be well taken care of.

He also lost his kindergarten teacher mid school year and got a new one. Both were very good teachers, but emotionally, it was hard on Christian to suddenly and abruptly say goodbye to a teacher he had grown to trust and love and had already built a relationship with. Making such a huge switch in the middle of the year was really difficult for him. I was often encouraged to make Christian a resident student, which always felt a little abrasive and never sat right on my stomach. It just about wore a sore spot on me, because not many people seemed to realize my hesitation in sending my medically complex five year old off to live away from home with people I didn't know and him be unable to reach me if something went wrong or he needed me because he has no clue how to use a cell phone. What seemed so obvious to me was foreign and strange to others. I wasn't about to give up my child just so he could go to school there. Christian needs an education, but he also needs his family. Not to mention, I have suspicions that some folks (not school personnel) were not being very nice to Christian while he was at school, and he is simply unable to tell me whether or not it actually happened.

Christian didn't do well at school, his progress was minimal, and it simply ended up not being worth the time, effort, money, or stress it was costing us to get him to school. So, I decided that we wouldn't be trying that again in the near future. It isn't out of the realm of possibility that he attend there again in the future, but for now, it just isn't the best choice for him.

So, option number two was our local school system. Here we run into the issue of living in a poor county. Just calling a duck a duck. Our school system simply can't offer him all that he needs as a child with a visual impairment. It's not that they don't want to. The people we have worked with there in the past would have no problem getting every teacher and piece of equipment Christian would need...if they had the resources to get it. But reality is, they don't, and I fear that much of Christian's time, rather than being inclusive, would be spent with him not really understanding or knowing what was going on, because he would be in a classroom designed for kids who can see, and his teachers would be trained to teach kids who can see, with little to no experience about vision impairments or how to make the classroom accessible.

So, option number three, homeschool. It just makes practical sense. I have a graduate professional degree, I have been working with a blind child for six years, I am well equipped to teach Christian the things he needs to know at his age, and I can do this. If this was high school lessons I was having to teach, I might be more worried, but I can teach kindergarten and first grade level things to Christian. I know I can.

"But won't he need socialization? To be around other kids?" Yes! He sure will! We will have so many opportunities to be around other kids, and not just kids who are blind. Every Sunday, Christian joins other kids at our church for Bible lessons, games, and worship. We have also joined The Honeybee Christian Co-op (https://honeybeechristiancoop.org/) where Christian and Chandler both will attend weekly classes with other kids, all taught by the moms! This semester Christian will be doing a creative writing class, a lego building class, and a United States geography class, just to name a few of the things he will get immersed in. The co-op takes field trips often as well.
The co-op is such an amazing opportunity to break up the monotony of just doing home instruction, and offers the boys things that I might not think to teach them, or can't teach them. They will need to have some independence from me and be able to listen other adults who are instructing them. They will also need to learn to socialize with lots of other kids of different ages and backgrounds. It's a well organized group and the moms/teachers are fantastic at what they do!

First Day of HoneyBee Christian Co-op!

Homeschooling also frees up some time for us as opposed to the schedule we had last year driving four hours a day, so we have already been meeting up with some of Christian's friends! Really, Christian will get a more realistic socialization by being around lots of peers of different ages and abilities rather than a class room of only typical six year olds or only blind six year olds. I'm pretty excited about it!

So, what will homeschooing look like? For us, we will attend co-op every week, and we will continue Christian's private therapies at Special Kids. We will also be picking up therapies at our local school for drop in services. Christian will go in to do therapy and then leave. Finally, we will have instructional time at home, field trips that I plan, and as much intentional play time as I can squeeze in! I have several Braille curriculum to get Christian started on reading and literature. I have a Braille math curriculum as well. Other things that we do will be unit lessons that I adapt so that both boys can enjoy the lessons together.

I already have a science unit study planned out about outer space, and am working on one on bees and another on the human body. All things the boys have shown interest in and want to learn more about, so I am adapting lessons to things they want to learn about to spark their creativity and desire to learn.

Christian's creation from his lego class at co-op!
He was learning to follow instructions and listen!

The reading lessons are Braille specific, so right now Christian is learning to read each letter of the alphabet and is honing in on his skills of "same and different" so that he can more easily and proficiently read once he starts reading more.

The math lessons are building on sorting, counting, and simple addition and subtraction right now. Christian really has a math oriented mind (which he did NOT get from me, by the way) and it's amazing to see how easily he understands the concepts and how quickly they make sense. He is a smart cookie and it's fun to watch him learn and grow!

So, we will spend our days filled with lots of activities, and hopefully, fun! I want this year to really ignite a passion for learning in the boys and to teach them to apply themselves and work hard. I also want them to enjoy it. I want them to have fun. I want the pursuit of knowledge to be enjoyable, invited, welcomed, longed for. I hope to establish that with them this year! I am optimistic that we can make it happen!

***Side note! I am still on my social media hiatus, so I won't be reading any comments or responding to questions about this blog until I return. I'm not sure when that will be, but when I return, I will try to get caught up! Thanks for your patience!

Wednesday, August 9, 2017

I've received a few comments recently on Facebook that are....thought provoking. One proclaimed, "WHAT ARE YOU DOING?" The commentor was referring to Christian's face and how I could be so bold as to post his photo for other people to see. She literally demanded that I explain to her why I hadn't had Christian's eyes sewed shut, and informed me, which is news to me, that I was exposing Christian to infection and putting him in danger. Then she accused me of withholding surgeries from Christian so as to create a "shock value" of his appearance. It's amazing how much strangers think they know about another stranger's medical condition and health, but it happens.

This isn't the first and only comment I've received along those lines, and I'm sure I'll hear it a few more times in my life. Obviously people like this are uncomfortable with Christian's disability, or disabilities in general, or maybe just differences among the human race. Despite their discomfort, I refuse to hide Christian away like some quasimodo so they can feel more comfortable. It isn't Christian who needs to change, anyways. It's them.

Honestly, no matter how much I know in my head that the opinions of those people don't mean diddly, and no matter how much I know that they are wrong, I can't help but be insulted and hurt it. And it doesn't get any easier the more times I hear it. While I realize that I am choosing to post photos of Christian on social media and that opens us up to this type of thing, it doesn't make it less painful to deal with and it certainly doesn't make the people saying these things right by any stretch of the imagination I really think that my posting photos of Christian on Facebook doesn't give people freedom to be nasty or rude. It is exhausting to deal with random strangers using social media as an opportunity to say things that they would never say to a person if they were face to face.

This is why I fear so much for Christian. As he becomes more aware of what people say, it bothers me that adults could think such nasty thoughts about a child anyways, but it's even more shocking that they can't seem to hold their tongue, and so their nasty thoughts become nasty words. I also fear the day that Christian truly understands the nastiness, and knows that it's directed at him. I fear that he won't realize that their nastiness is a reflection of them and has nothing to do with him.

I've just decided that it's useless to try to argue with people like this. They don't talk to discuss. They talk to be heard. They talk to make noise. They talk because they believe they are so right in their assertion that they can boldly, tastelessly, and loudly proclaim their rightness in such a manner than any challenge to it will be ignored. I would be happy to talk with people, to explain what's going on, that Christian is medically taken care of and that I post his photos on Facebook just like any doting mother would, but such people don't usually want to listen. They don't want to hear that they just might be wrong about that thing they have no experience with or knowledge or.

So, I just don't see a point in wasting my time trying to argue with people who want to argue. Now, debate, I am all about some debate. I'm an attorney. It's what I do! But arguing isn't for me. I debate to spread understanding and to learn some things, too.

So, instead of wasting my energy arguing, I decided to come over to my blog and blow off my steam by writing. Getting to just spill my thoughts and share my heart here is a therapy of sorts for me. So, here we are! Warning: The rest of this post is going to be dripping with sarcasm. You've been warned! haha!

This whole incident reminds me of something I hear often from people on social media who want to challenge me as a parent (why, though?) Every so often, I hear this argument come up against me. (I find it crazy, by the way, that folks who don't know anything about Christian or myself have an opinion and actually verbalize it on our lives, but I digress.) The argument goes something like "That kid (they never say his name, it's too personal when you are throwing insults at a little kid I suppose) will be bullied his whole life, and therefore you should have..." then they conclude with some crazy assertion that they say I should have done. It's always something crazy such as, I should have aborted him, literally ended his life, or I shouldn't post photos of him online, ya know, hide him away from the real world, or I shouldn't let him out in public. You know, all those things people usually say about a six year old child. Oh, wait... Kid you not guys. People actually have told me to 1. seclude my child or 2. kill my child because he will get bullied.

I would post that Kevin Hart photo again, but you get the idea.

So...let me get this straight. Christian will probably get bullied because of his disability. I can agree with that. They're right. He probably will. Because there are some real jerks (sorry to be blunt, but it's the truth) out there, and they somehow enjoy hurting others. Have we not all known people like this?

But here's where I can't agree. So, because Christian will probably get bullied, I should never let him out the front door of his home, or I should have killed him? I should punish Christian because other people are idiots? That is really what I've been told. The statistics are that one in four kids gets bullied. Chances are my other child, Chandler, will get bullied too, just for existing. I was bullied as a kid. Not because I have a disability, but because someone had issues that they dealt with my being mean to other people. So they found something about me to target and used it to bully me. Should I have been kept in my home or killed?

OOOOORRRRRRR!!!!!! What about this! This is revolutionary, so get ready. What if we deal with bullies by confronting them, calling their behavior unacceptable, teaching them to act better, and having consequences for when they don't. Novel, I know, but for some reason, the thought of punishing victims rather than perpetrators just doesn't sit right with me.

Someone who falls victim to a bully isn't the issue. They are not at fault. A person who decides to treat another human being terribly is the issue. Let's just be clear on that. If and when Christian ever falls victim to a bully, it won't be because something is wrong with Christian. Anyone who could bully another person, and in my opinion, especially because they have a disability, needs some serious help.

I'm tired of hearing the same old song here. I have heard it well more than once or twice at this point. How could I? How could I give Christian life knowing he would get picked on? I think the real question is this:

How could you be someone or raise

someone who would ever decide it was acceptable to mistreat or bully another human being?

What I have done for Christian and what I do for him, is give him a happy, high quality life where he is loved beyond a shadow of a doubt, where he has everything he could possible need and much of what he wants. I give him a life where he is doted on constantly, told how wonderful he is, and is given the opportunity to be the normal little boy he is. I give him a life where his medical issues are well managed by me so that he doesn't have to worry about them or let them interfere with his life. I give him a life where literally hundreds of thousands of people follow his progress and send encouragement and love to him from all over the world on a daily basis. There are perfectly healthy kids out there whose parents don't care if they live or die. Christian is not the one we should be taking pity on. What I do for Christian is more than what some parents do, unfortunately. Honestly, every child deserves to be loved the way Christian is loved. That's what I give him.

So, how could I? How could I love my child so much? It's easy! Christian is easy to love. I am his mama and he is my world. That's what mama's do. They love their child beyond their looks, beyond their faults, beyond reason. How could I? It's easy because Christian is easy to love!

Monday, July 31, 2017

He asked me the question I've been anticipating, dreading, since soon after he was born.

"Mommy, what happened to my eyes?"

I froze for a second. Then asked him to repeat what he had said. I wanted to be sure I had heard him correctly, but really, it bought me a few more seconds to think of my response and process what he had just said to me.

His question wasn't sad. It didn't carry the weight of the heaviness that I feel sometimes. It was a simple question that he simply wanted an answer to. It was a question full of curiosity, not pain.

I swallowed the knot in my throat and tried to figure out if Christian had actually asked me about his eyes or if I had misunderstood. You know those moments of panic where you suddenly have the ability to think 47 thoughts in a matter of five seconds. I was there.

I don't think I could love this boy more

I had decided long ago that I wasn't going to mention Christian's differences to him until he mentioned them to me. I saw no point in pointing them out or making a fuss over them. They really aren't differences to our family at this point. Christian is just who he is and his differences aren't even thought about on an average basis.

As far as I can see things from my point of view, we are a normal family and Christian is a normal kid. This is our normal. Having a blind child with complex medical needs is not out of the ordinary for us. It's what we do. Every day. We wake up and it's there. We go to bed and it's there. We don't really give it extra thought. We handle it because it's what Christian needs, and as a parent, you just do for your children what they need. I've been tube feeding for over six years, so giving a tube feeding doesn't take anymore thought or effort from me than preparing Chandler his lunch. Christian's needs are just second nature to us at this point.

I worried that making a fuss over Christian's condition or differences would indicate to him that something was "wrong" with him. If they are worth making a fuss over, then I figured that would clue Christian in that there was some big deal to fuss over. I never want Christian to think he is defective, because he isn't. He is different and we are okay with that, so we speak matter-of-factly about his differences when issues arise. "Christian is blind" is about the same to us as saying "Christian has blonde hair." It's just a fact. There is no negative implication to it. So, that's how we speak about it.

I had also planned years ago how I was going to respond when this day came, the day he figured out and asked me about his differences. I decided that I would be cool and calm, making sure that my voice conveyed my message of "no big deal" to Christian.

Sure, there are times when his differences are a little bit of a big deal, but in every day life, they really aren't important. What's important is Christian, his happiness, his quality of life, his education, his abilities, his progress, his health; but my fear was that if we made a fuss over the differences, if we pointed them out or acted like they mattered, then Christian would pick up on that. And by the same token, if we treated it as no big deal, then Christian would pick up on that, too.

"What did you say, Christian?" I asked him, leaning in to make sure I could hear every word above Chandler bouncing around and chatting.

He reached up to his face and touched near his eyes, "What happened to my eyes when I was born, Mommy?"

As I began to answer, nervousness, anxiousness, and sympathy set in. I have known this day was coming for a long time, but I wasn't expecting it just yet. I feel an immense pressure to give the right answer, to convey to Christian how amazing he is, even when, and especially when, I talk about his differences.

I don't believe that Christian just suddenly came to some realization that he is different in that moment and asked me about it. I don't think, still, that Christian now fully understands that he is different, or how. I sort of thought that it would happen suddenly; that one day he would go from not knowing to knowing. That isn't really how it's happening. He is picking up on things, slowly, and figuring it out piece by piece.

I think he has heard someone, probably me, say something about his difference. I think he has been churning it in his mind since he heard it, and at that moment, it came to the forefront of his thoughts, so he asked about it. I have recently done several phone interviews at home, and of course Christian is there with me, so I wonder if he didn't hear me talking about his eyes there, explaining to someone over the phone exactly what his condition is.

Christian is such a random kid. I can ask him if he's hungry and he will start telling me about our trip to the grocery store last week. Christian talks about whatever he's thinking about, not necessarily what's going on right at that moment, and not necessarily what everyone else is talking about at that moment. He processes the world in his own special way, and it might take days of replaying things over in his head before he has fully processed something. As he replays things he's heard or experienced, he will randomly talk about them. I usually know what he's talking about because I am usually with him, so I have a point of reference to carry on his random conversations as if they are totally normal. They really are normal. What six year old isn't random at times, right? Most people just don't have that point of reference like I do to carry on Christian's random conversations, and so they can't hold those conversations, although they are usually kind enough to try. It's sweet to see strangers ask Christian how he is, and when he answers that he has a pet fish, they smile and ask him to tell them more about that fish :)

So I began my answer, letting the words fall slowly as I chose each one carefully and purposefully. "Well, you were born with different eyes, Baby. But that's okay. I love your eyes just the way they are!" That's what came out of my mouth in that moment. I was okay with that answer. I hoped Christian would be. I held my breath waiting for a reply. I wondered if he would ask more questions, and he did.

"What is that?" he asked as he touched near his eye again, doing his version of pointing.

"That's your left eye," was my answer.

He moved his hand to "point" to his right eye, "What is that?"

Again, I said, " That's your right eye."

The conversation took a casual turn about something total unrelated (my random child) and I knew we were not going to be getting much deeper at this point. Christian asked how many eyes he had and then counted them. Then asked me how many nostrils he had. (Lol! Crazy kid!)

Our "normal" family :)

I smiled with relief that he was satisfied with my answer. I was also relieved that my answer came out as well as it did. I don't know for sure how eloquent my answer sounded, but I don't think it was terrible. I gave him a hug and kissed his forehead and that was it.

I've been waiting for this day for six years. I knew it would come. It wasn't as terrible as I thought it might be. I was scared that I wouldn't be able to give Christian an answer that he was okay with, or worse, I was afraid that when he asked me about his eyes, it would be because he was upset about them or had heard someone say something unkind about them.

I'm so thankful that his question was simple and unemotional. I'm thankful that he hasn't caught on to the notion that some people hold that his eyes are "bad." I'm thankful that I am getting a chance to give him his first impressions about his difference and make them positive and happy.

This parenting gig is a hard one, y'all. I am praying for grace and discernment to do it well! God is giving richly. <3

Thursday, July 27, 2017

One year ago this week, I completed my first day of testing for the bar exam. The nerves were unreal. I really didn't think I would be that nervous. It takes a lot to get me worked up, because once you've seen your child lying in a hospital bed almost dying, not too many things can top that, ya know?

But man, I was was the wreck that day. I remember the relief I felt when it was over and yet there was still this dull little ache of nervousness because I knew I had to wait until October for my results.

So here I am oneyearlater. And I'm just going to be honest with you guys. Isuffer from an extreme case of impostor syndrome.

I made it through law school facing odds that most anybody would call challenging, even without law school thrown into the mix. I remember going from the NICU to law school for several weeks during my first year. Raising Christian while doing law school was definitely top three hardest things I've ever done!

I passed my bar exam on the first try, which less than half of most people do.

During my law school career, I became a public speaker, a published author, a blogger, and run social media pages that reach millions of people every month.

And while doing all that, I have juggled the needs of two very high-maintenance children, and they aren't too screwed up (LOL)!

Bar Exam day one completed! These two weremy motivation for it all! They are the reason Iworked so hard for that degree!

And now, I am so terrified of taking the next step into starting to practice law that it has paralyzed me. It's been a year and the extent of my practicing has been to take one estate planning case. I'm honestly too afraid to even advertise that I can do wills and estates.

Impostor syndrome is basically this, I am an attorney. I have the degree hanging on my wall to prove it. I'm licensed to practice law in the state of Tennessee. And yet I feel under qualified, as if I'm a fraud or an impostor. I have the same degree that every attorney in the state has, although I do have less experience, and for whatever reason that translates in my head to me not being worthy or able to do what every other attorney in the state does.

Imposter syndrome doesn't reflect reality. It really only reflects the internal battle inside my head. I know who I am and I know what I've been called to do and yet somehow I still feel unqualified. I worked hard and got the degree and pass to the bar and somehow I still feel like an impostor. It doesn't make any sense when I look at the words written on the screen.

What I'd really like to do is start some Guardian Ad Litem work for children in the court system, and yet I am absolutely terrified about taking that step. I know I would be good at it. I'm so passionate about children, I am passionate about the law, and I spent years getting a degree where I could help them. And now I'm just sort of stopped. Fear has stopped me.

Every time I think I'm ready, the questions begin and the internal battle rages. What if I mess up? What if I do something wrong and it costs someone? What if I miss something and it means detrimental effects for my client? What if I'm not good enough?

I'm just being honest here, I am terrified of messing up. I've never been perfect but I have always felt an immense pressure to do exceptionally well. It's an expectation that I've always had for myself. I definitely haven't always reached the point of excellence in everything I've done, but the thought of failing and failing miserably at this has paralyzed me.

The thing is, I suppose, that even in practicing law, everybody's going to mess up at some point. I'm sure some people mess up big and some people mess up in small ways, but I'm absolutely terrified of messing up in a big way.

I'm sort of at this crossroads now where I need to decide if I'm just going to sit here and let fear continue to Cripple me or if I'm going to step out and take that chance no matter how scared I am. I know what the answer has to be. I know what I'm going to do, but I'm still terrified.

Graduation Day! Finally!Class of 2016!Lacey Buchanan, JD

I want to get better at messing up. Not that I want to mess up more, but I want to be able to accept that I'm not always going to get it right. I want to be resilient in the face of failure and mistakes, to pick myself back up and to keep going, to hold my head high with dignity even when I get it wrong. I want to give myself some grace. I beat myself up over mistakes in ways I would never do to someone else.

I know without a doubt, I have known for years that God called me to the profession of law. I have known most of my life that I wanted to be an attorney. I know deep down that I can make a difference for people because I care so much. I know that I can help change people's lives with the talents that I can offer. And I know that God has been faithful to get me this far, and I'm still terrified.Oh me of little faith, right? Doubt and fear has taken over this aspect of my life. I recognize it, and I am ready to move forward despite the fear. I am ready to start doing what I was made to do! I am ready to face my fears and stop letting them control me.

The thought of never getting to help people and never getting to fulfill my purpose in life is much more terrifying.

Thursday, July 20, 2017

That concept seems so simple, but when you really think about how it applies to our society, it's easy to see how we as a society really struggle to understand and apply it.

Our society is FULL of commercialization that tells the listener that they simply must have that newest, latest product, that they need to look like this model, that they need these clothes, this makeup, this body, this hair, this car. Then, they will be happy. They do this because it makes them money when we go purchase these things in an attempt to fill that void and make ourselves happy, right? What iPhone are model are we even on at this point? I can't keep up.

"Keeping up with the Jones" is a real thing. We envy other people and what they have. If only I had a house that nice, a family like that, then I'd be happy.

I have found myself even doing it in mom circles. I wish my children were as well behaved as hers. I wish my husband supported me this way like her husband does. I wish I could look that good while taking care of multiple children. Her life seems so perfect. I'd be happy if my life was more like hers.

We idolize those things, hold them up on a pedestal, and they become our goals to attain happiness. They become our gods.

But it's fleeting. Chasing happiness will always leave you chasing and coming up feeling unfulfilled. That's because while those things are nice and will probably provide some temporary feelings of happiness, that new car will get old, and then you will be right back to chasing again. That perfect partner will mess up, and then you'll be out looking for the next perfect partner again. Those perfect children will break your heart, and you will be left wondering what went wrong. That perfect body will age, and then you will be back to wishing you were someone else.

We think that if we could just make our lives perfect, we would finally be happy. But a perfect life isn't what creates happiness. A perfect life isn't really even possible.

I think one reason that people find my family so inspiring is the joy they see. They see this incredible joy mixed right smack dab in the middle of an imperfect situation, a child with complex medical needs, issues that take lots of work and that comes with lots of challenges and sometimes a lot pain.

I get it. I would've thought the same thing before Christian came along. I would've looked at someone like me and wondered how on earth they could be so happy. So, that's why I wanted to write this blog, to explain it a little bit to you guys. I hope that in sharing my heart, I can give a glimpse of the God we serve.

So, how can we be so happy and so full of joy despite such imperfect circumstances? Simple. Our joy isn't derived from our circumstances. Our joy, our strength, and our hope comes from God. Yes, we have so many simple moments of happiness that aren't "religious." When Christian and Chandler spend time playing together, the happiness in my heart overflows. When Christian tells a joke and giggles infectiously, I can't contain my smile. When either of my boys accomplish something, the pride swells in me. But it's because of the state of our hearts and the depth of the joy that God has given us that we are able to fully experience and enjoy these little moments for the gifts they truly are. "Every good and perfect gift comes from above, coming down from the Father of heavenly lights."

Long before Christian was ever born, God called him fearfully and wonderfully made. There are no exceptions in that verse that say "except for people born with disabilities." That means it certainly applies to Christian, and to you and me.

And while I don't understand why Christian was born with his disability, and while I would certainly take it from him if I could, I have peace knowing that I don't have to understand it. God says that His ways are not my ways and His thoughts are not my thoughts. I can believe that or not, but me personally, I choose to believe it. And so, I don't spend time racking my brain over a question that simply can't be answered.

I don't know why God didn't give Christian his eyes. I certainly believe that He could have done so had he chosen to. I don't know why we got a "No" from God when we prayed for Christian's physical healing. What I do know is that whatever purpose God has given to Christian for him to fulfill in his life, God has also equipped him to do it. Christian lacks nothing he needs to accomplish God's purposes for his life. God did not call Christian to some purpose and then forget to give him what he needs to complete it. Christian is whole as far as it pertains to his ability to fulfill his God given purpose and calling.

Personally, I believe that if God had his way, everyone would be born perfect and healthy. We pray the Lord's prayer that says "Your will be done on Earth as it is in Heaven," and we know that in Heaven, everyone is healed and whole. Yet, because we live in a fallen world, God doesn't always have his way. We have free will to usurp God's will and plans, and don't we do it so often? I do!

But knowing God and knowing His character, it only makes sense that whatever "deficits" we have, and we ALL have them, God is bigger. And in our weakness, God is stronger, because His grace is sufficient for us, and His power is made perfect in our weakness. I think that's something to boast about.

God takes those deficits and manifests His power and His glory in ways that we could never imagine or understand. In our humanly, limited scope, we might never grasp all that God is doing or working out for us, but we don't have to. We just need to trust that He is.

I have trusted God to work all things together for my good and he has done just that. I am able to share Christian with the world, and teach others about the God whose glory he reflects. God has allowed me to use my story as a living testimony of the truth and power of God. God has been able to use even me, someone as undeserving and imperfect as me, and a little boy who the world considers "not whole" for his mighty purposes.

When I was finally able to grasp all of this, how could I ever be sad or ashamed? How could I be upset about how God was working so powerfully in us and showing me just how much He loves me and my family.

The day God gave me Christian, He put his love for me on display, and then did it again when He gave me Chandler. It's easy to be joyful when my happiness comes from the One who gives true fulfillment and everlasting joy. It's easy to be happy when my eyes are on God and not on my circumstances. My circumstances may be difficult, but my God is good and He loves me with a love so powerful that He was willing to become human and die for me. That's powerful. So, I count it all joy!

Thursday, July 13, 2017

We've all heard of the terrible two's, but what do you call it when a child turns six and discovers his own free will and independence? The suffering sixes!?!? haha!! Whatever it is, I think we are in it!

Christian had probably one of the worst karate classes he's ever had today. Whatever his sensei told him to do, he was determined to do the opposite. It took multiple times to redirect him to any task.. Even just simple tasks like "Close your hands into fists" became laborious as it took asking five, six, or seven times to get even a little cooperation.

Christian at karate today

There was very little karate accomplished today, but I hope something bigger might be taking place. Because of the difficult time Christian had today in karate, it gave his sensei and I both a platform to discuss these behavior issues with Christian. It gave us a really concrete concept to talk to Christian about, which he needs to be able to comprehend and expand his thoughts. I can pinpoint specific things he did at karate that are not exemplar behavior and explain how and why he needs to do better. We've been discussing it today, as did Mr. Taylor at the end of class today, and I think it's clicking for C.

The last few months have been a challenge behavior wise for Christian, but I think we are finally over the hump and starting to even out and figure our way along, despite the rough karate class today. I think Mr. Taylor is one person Christian hasn't bucked on too much just yet because he respects him, and I really believe today was just some final testing for Christian to try to figure out how hard and where he could push his limits. He's been testing and pushing me for months now, so Mr. Taylor has been spared so far.

I think it all started with a hard school year. Not only was it Christian's first year of school and extended stays away from Chandler and I several times each week, but some things went on that shouldn't have through no fault of the school, and unfortunately, Christian reacted with aggression. It wasn't his fault, and it's a total expected reaction in circumstances like that, but it left me worried nonetheless.

On top of that, the school year was a time of growth for C. He had lots of therapies and lots of new experiences, which gave him a good developmental boost! He began speaking even better, using larger words and more complex sentences. He finally started using pronouns correctly after years of saying them wrong in such a cute way. (I'm happy and sad all at once over that one #MomLife.) Christian started learning that he can walk and explore independently without holding my hand. He already knew this and tried it a little, but it was really reinforced at school and he was shown exactly how to do it. This newfound freedom was exciting for Christian. His favorite phrase this school year has been "I want to do it all by myself, Mommy!"

Basically, he went from a pre-schooler to school aged kid. He is growing up, as much as it pains me to admit it.

Christian's first day of kindergarten last August.
Look how much he's grown!

That new found independence mixed with the new aggression he learned in an attempt to protect himself from someone who wasn't being nice brought lots of power struggle between he and I.

Christian mastered the art of the "No" and was testing the waters to see exactly where his limits were. He would disobey until he was absolutely forced to do otherwise. He would get angry and lash out over not getting something he wanted right away. It was rough, and it also wasn't the expected or typical behavior that I had known from Christian.

The thing that worried me the most was that Christian is so dependent on me to help him with things like safety, and he just decided that he no longer needed that help. When I would tell him to stop walking because he was getting close to an edge or something that could hurt him, he just continued walking and refused to listen. He didn't care that he was about to get hurt. Literally, getting hurt mattered less than asserting his independence and ability to make his own choices.

So, the last few months have been a challenge, to say the least. Christian has always been my calm one. He is the compliant child, or at least he was. He was always the sweet, sometimes quiet little boy who always had a smile on his face and a happy disposition, and suddenly I didn't know where that happy little boy went or who this screaming banshee that looked like my son was.

When I finally began to nail down the issues and figure out what was really going on, I was finally able to help. I decided to drop our nursing after months and months of having different people in and out of the home who Christian would get attached to just in time for them to move on to the next case. Christian needed consistency and we just weren't getting it, and while that is just how that industry works, it was doing harm to Christian. On top of that, Christian became suddenly scared of any new nurses that came into our home (I'm talking, fetal position in my lap until they left) and strangers in general. That was when I really honed in on what was going on and decided it was time to end nursing care.

I was nervous about ending it, but I can't say enough about what a load it has lifted. It's strange how having nursing care went from lifting a burden to creating one, but it did, and I was hesitant to give up the help that I desperately needed. It took me some time to figure out exactly how we were going to manage without some sort of respite care for Christian. I was honestly nervous. Christian requires a lot, and so does Chandler. Christian's tube feedings and care, along with his sighted guide safety needs can keep someone busy all day long. I wasn't sure I could do it all alone. I had also planned on starting to work soon, and that would be out the window without someone who could feed Christian. I hadn't planned on going without nurses, and I knew it would be challenging, but I knew deep down that it was time.

I made the leap of faith, well, the call of faith, and cancelled the nursing care anyways because I knew it was what was best for Christian. I noticed an almost immediate change in Christian for the better. Within just a week, he was more relaxed and the aggressive attitude started to calm down. He still wasn't listening better, but we have been able to work on that since the aggression is leaving. It's been...2 or 3 months now, and Christian hasn't questioned once why his nurses aren't here until just a few days ago actually. That tells me a lot about how he was feeling about it. He's had nurses for most of his life and went for 2 or 3 months without ever speaking about the fact that they were suddenly gone. I know he noticed the change, because he isn't stupid by a long shot. He used to wake up every morning and ask who was coming to be his nurse that day. He *knew* there were no nurses, and yet he never asked me why or where they were. That spoke so loudly to me.

Christian calmed down a ton, but the willfulness was still going strong, and he was just being so daring and using zero safety consciousness, which is so important for visually impaired people. (Think, walking carelessly off the steps because you don't care to take an extra few seconds to slow down and find them first.) I began to try different things to see what was going to help. At first I tried cracking down, and it just made him fight me that much harder.

I couldn't even begin to discuss everything I tried, because I was trying it all. I almost reached a point of feeling helpless, and tried calling around for some help. I was met with brick walls and 'No's." So, I kept persisting. Finally, the one thing that worked was more patience than I knew I had. The more Christian pushed my buttons, the more angry it was making me, and the more I was reacting with punishment. It just kept making things worse. I had to really start stepping outside of that anger and doing what I knew I needed to do.

Christian was trying to take control because he had felt out of control in his situation with school and nurses, and here I was trying to take that control away. He wasn't giving up without a fight, and rightfully so. He needed to know that his current situation wasn't going to get out of control. He needed me to listen to him and hear what he wasn't actually saying. He also needed more than to hear the aggravation and frustration in my voice directed towards him when he didn't do what I told him. He needed me to talk him through and explain to him why I needed him to do what I asked him to do, so that he could then CHOOSE to listen. He needed to have the freedom to choose to listen to me, not just be mindlessly forced into it. He also needed some stability and consistency, to know that he was not going to be put back into a situation like what existed while I wasn't around to protect him at school, which I think just comes with time.

So, Mr. Independent, I am happy to report, is doing better! The independent streak is still there and sometimes the aggression is still rearing it's head. He is still insistent on doing things his way and being stubborn about listening to adults.I can't say I blame him, because adults failed him and he is just trying to process it all. This school year taught him that not all adults are trustworthy and that he can't listen to everything he hears.

I know his strong determination will serve him well one day if he is not led by the pack, not a mindless follower. It is truly my hope for him that he will be a strong and assertive man who stands by his principles and doesn't bend to pressure. The thing is, I have to survive raising him first! :)

I'm just thankful that after months of working through this, we are seeing progress. I hope that next week's karate lesson is better and that Christian learned something today! I'll be sure to keep you guys updated! Thanks for reading!

Friday, July 7, 2017

Earlier this week we visited Little Rock, Arkansas. It was an extremely quick trip, there and back in about 38 hours. I was invited to interview with FamilyLife for their radio program. The program isn't available yet so I can't share links for it, but you can check out the FamilyLife website if you're interested in knowing more about them. (www.familylife.com) The program will air sometime in Septmeber, and I will share it with you guys then!

I interviewed with FamilyLife about my book,Through the Eyes of Hope.www.eyesofhopebook.com

We left the studio at 3pm and had a six hour drive ahead of us. We hoped to get home around 10pm and get the boys to bed. That was the plan. Unfortunately, it didn't work out that way. The first big snag was when I locked my keys in the car. That set us back a good hour.

Christian had dropped his iPod shuffle in the floor while I was driving, so when we stopped for gas, I tried to find it for him. It keeps him busy on the drive when there isn't much for him to do but sit and wait. So, we stopped for gas in Earle, Arkansas, and, trying to be smart with our time, we knew that this tank full would get us all the way home.

I got Christian out of the car and looked all over the floor and around his car seat. The iPod was nowhere, of course. Both boys were doing the potty dance, so I told Christian I would look again after we used the bathroom. So, I closed the doors and started walking towards the gas station. Before I even got passed my car, my dad who came with me says, "Do you have your keys?" In that instant I knew I didn't.

I had laid them in Christian's car seat to free my hands to look for the iPod and that's where they lay. I have the type of car that has the keyfob that won't allow you to lock your keys in your car. Unfortunately, the keyfob broke about a year ago and the dealership gave us an estimate of $150 just to reprogram it, and that price was for what they guessed to be wrong. If it was something else, it could be even more. I plan to get it fixed eventually. It just hasn't happened yet. *sigh*

Oh no!!!!! So, I immediately started trying to call a locksmith. NO ONE would answer their phone. It was the day after the Fourth of July, and I guess everyone was closed. I called at least half a dozen places with no success. Great! So, we went to the cash register and asked the clerk if they knew if the local police department would come pop a lock. They said no. I called anyways, and they didn't answer!!!! I was { } <----this close to panicking. I mean, I was basically out of options. How were we going to get home?

Finally, I asked the clerks if they had a wire hanger. What else could we do? Breaking into my car was really all we had left. One of the clerks immediately began searching for a hanger for us. She spent a good ten minutes looking for a hanger, calling another part of the store to ask if they had one, even searching in her car for one. She finally came back with two hangers! Those hangers looked like salvation!

Not only did she produce a hanger, she came out to help us pop the lock! My dad pried my door back while she got the hanger inside and after just a couple of minutes, she was able to press down on my unlock button and unlock the doors! Unsung hero, y'all!!!!!

My dad grabbed his wallet to give her some money, but she refused to accept it! She helped us just because she saw that we needed help. I am so thankful that if we had to get locked out of our car, it happened there at the gas station she worked at. If she had not helped us, I have no idea what we would've done.

So, we were finally back in our car. What a relief! My car alarm was going off and everyone was staring and I was so happy to just be in my car that I didn't care! lol!

We went on our way towards home. By this time it was 6pm and we were still in Arkansas. We had only made it about 1/3 of our trip home. So there was no way we would be home by 10pm now, but maybe 10:30 or 10:45pm if the rest of the trip went smoothly.

The rest of the trip did not go smoothly. -_-

About an hour after the keys-locked-in-car incident, the boys had to potty again. So, I pulled off the highway and found another gas station. Christian was literally about to pee on himself, so I jumped out of the car, grabbed him, and began a mad dash to the restrooms.

About the time we got to the door, a mother and her teenage daughter were standing there, and I had to step ever so slightly around them. In my mad rush, I was concerned about preventing Christian from peeing on himself, but just happened to notice the look on the face of the teenage daughter as we got closer to her and the gas station door. Ugh. She registered shock. I had no intentions of responding to that. I never do, anyways, but Christian needed to potty, and I was holding him and stood to get peed on too, if I didn't get him to a toilet soon, and that was a great concern in the moment. That all too familiar fear that I always feel in the pit of my stomach when things like this happen, it rose up, and a thousand things rushed through my head. "Please don't say anything. Please let us by. Please don't stop me to talk. Please don't stare. Please stop gawking. PLEASE JUST STOP!"

Before I could make it in the door around this mom and daughter, the daughter's look of shock turned into an audible gasp, a ridged body posture, and terror on her face. My heart sank as my legs were still trudging towards the gas station door. Then, as quickly as I felt the disappointment, I felt the anger rise up. Christian heard that gasp. I pray to God he didn't realize it was directed at him, but in that moment, that was all I could think. What do I tell Christian about this?

My instant reaction was to simply glare at her as I reached for the door to the building. If looks could kill, y'all. Her mother noticed the entire incident play out. She looked from me to Christian to her daughter and back to Christian and I. She saw her daughter gasp in utter shock and fear at my child. She saw my look of disdain for her daughter's reaction, and in what I can only imagine was her motherly instincts kicking in and attempting to help her daughter, she said "Awwwww!" in a kind, sweet voice, and gave a large smile. I did not smile back. In fact, I was probably glaring at her too, as I shifted my eyes from her daughter to her when she spoke.

All of this transpired in literal seconds. As quickly as it happened, it was over and I was inside the gas station looking for a restroom. As I helped Christian with the toilet, I tried to register what just happened. I was angry and in disbelief, and also ashamed that I hadn't handled it better. I generally try not to glare at people in public. Generally, I try not to respond to rude people with rudeness.

Christian was saying something to me, I don't remember now what he was talking about. I just remember praying silently that he wouldn't mention what just happened, that he didn't realize what had just taken place in front of the gas station. I remember answering a question he had asked me, and I had to swallow the lump in my throat to get the words out. My legs and hands shook just slightly as I helped Christian off the toilet and to the sink. He kept talking and I struggled to keep my voice upbeat and not let him hear the shaking in it.

As I took Christian back through the gas station to get to the car, we passed by the mother and daughter again, this time inside the store, and this time, not as close in proximity. They never looked over at me and I never looked over at them.

I kept my eyes locked straight ahead on the door and moved quickly to get Christian outside. I felt like I was running away from something. In reality, I seriously doubt they would have dared to approach us again, especially after my glaring at them, but I was terrified they would. I was terrified they would come up and try to apologize or say something about the incident, and then, if Christian hadn't realized what happened, he surely would at that point.

So, I bolted for the car, got Christian buckled in, sat down, and put the car in drive. I breathed in a deep breath and let it out slowly, trying to let go of what just happened. I wish it was that easy. My shoulders slumped forward with the heavy weight of what I have carried for six years becoming just a little heavier in that moment.

Not only was I disappointed in the actions of the teenage girl, but I was also, and more so, disappointed in myself. I could have I SHOULD have reacted better. I should have showed kindness. I was already stressed from the incident an hour earlier with my keys, and the exhaustion of an 800 mile round trip plus interviews in 38 hours was hitting me. But still, I wish I had responded differently. In all honesty, I probably just built a barrier for that family when it comes to people with disabilities rather than a bridge, and that's not who I want to be. That's not who I am or what I am called to do.

When the pain of incidents like this is fresh, it's hard to remember, but I know overall, this will make me stronger. I will be a better person for having experienced this. I will allow God to use this to teach me, refine me, and help me be better than I was in that moment. Thank God that the incident didn't end when I walked out of the gas station. It continues inside of me while I process it and learn what God wants to teach me through it.

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About Me

I am a Christian, mother, wife, daughter, aunt, sister, and friend to some amazing people. I am a student at Nashville School of Law. I work at a daycare. I am passionate about disability advocacy and education.